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1 Regional and National Expert Centers as a Guarantor for Structural Quality in the Management of Rare Diseases Renza Galluppi Barbon Presedent of UNIAMO Renza Barbon Galluppi October, 2nd

2 g1 Patient Organisations in UNIAMO FIMR onlus / / / / / /

3 Folie 2 g1 galluppi;

4 Is the national federation for Rare Disease Patient Organisation in Italy. A privileged partner for EURORDIS - the European Organisation for Rare Diseases Many national alliances belong to the Council of National Alliances (CNA) founded by Eurordis. In EURORDIS there are 16 National Alliances on Rare Diseases National rare disease alliances serve to bring together all the many rare disease groups in a particular country. Alliance members include large and small patient organisations as well as professional organisations, and liaise with government bodies, scientific and medical organisations on the subject of rare diseases.

10 2001 The Italian Law on Rare Disorders STATED To plan a network of centres each dealing with a specific group of rare disorders To give specific benefits to the affected people To create ad hoc diagnostic and therapeutic guide-lines defining the limit of benefits To constitute area-based Registers focused on monitoring all patients

11 RD list Bound the benefit supplying to the patient together with the confirmation of diagnosis performed by few selected centres of reference THE ITALIAN LAW crucial points Oblige the Authority to define through a formal procedure Centres of Reference the for specified groups of rare diseases Institute Rare Diseases Registers

12 main mechanism CITIZENS AUTHORITY (government) Duty to define the network of Centres of Reference and to start up the system Advantage to obtain the exemption, that is to say entitlement to obtain the benefit of an health care completely free of charge ONLY if diagnosed and followed by the Centres of Reference

13 The Constitution was modified The Authority in charge of health planning REGIONS in charge to define the Centres of Reference and activate the whole System

24 Selection of Health Care Centres of Expertise for Rare Diseases for every group of rare diseases Creation of a Health Care Network on Rare Diseases 2

25 2 WA YS Several indicators 1 (experience, research activity, patients associations links, diagnostic and therapeutic facilities, etc ) Number of patients followed by the centre estimated through the 2 utilization of the Hospital Discharge Records 1. Selection of ICD diagnoses 2. 3 years surveying 3. reconstruction of individual histories of each patient

43 Translating law to reality tailor-made on the patient and his-her family changing as years and situations roll by draw a health care plan assure continuity among centre, local hospital, local health services and place of life of the person Prise en charge

44 Health plan depends on Health care NeedS

45 Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Centred on the health-care problem Diagnostic assessment

46 Diagnostic assesment From disease To impairment profile From impairment To functioning From functioning To activities (what he can do, what he is expected to do, what he wants to do) From activity To life environment (family, school, work )

49 Has to support Maximum development/dignity/social Inclusion/Non-discrimination/ Quality in survival Prise en charge

50 Health care plan is based on a health and social organization that links centres to local health and life places (vertical network) links several institutions and dimensions of local community (horizontal network) allows for each patient the immediate access to the available care (equity, effectiveness)

51 Family centred Bare in mind the patient s suffering Specific, unique and dynamic health care plans Each professional is a small part of a bigger system

60 Our Mission: Offer to all patient organizations the opportunity of being listened to, regardless of the frequency of the interested pathology Become an active subject in the decision making process within the scope of the Programma Sanitario Nazionale (National health programme) Improve and help the growth of international cooperation among patient organizations to ensure common aims and working methods Obtain equality of treatment for all different diseases and in all different countries

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